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Are Antivirals and/or Antibiotic cocktails the Cure for LC?
I’m interested to know what people have tried after being tested for LC due to reactivation of underlying conditions such as EBV, VZV, CMV, Lyme’s, Bartonella, etc.
Has anyone found a treatment regiment that works?
(Also, if you haven’t been tested for these underlying conditions — DO!)
I just saw my LC specialist who is a chronic illness-infectious disease specialist (ID). She has been really insightful and helpful! It took 6 months to get in, but well worth the wait!
I had been researching for 6 months all of the new research on LC and treatments and was trying off label treatments on my own like Paxlovid for 6 mo. And all of her knowledge and answers are up to date with research as well as treatments. Super blessed to have found her and I wanted to share what has been found. As well as ask if anyone else has been tested for underlying conditions and had treatment?
I’ve been to see docs about possible underlying conditions but they either didn’t believe in them (Chronic Lyme’s) or didn’t know the most sensitive and specific testing to rule these out, or don’t understand how to interpret the findings. But she does because she’s a specialist in chronic conditions!
I was tested by another doc for EBV but it wasn’t interpreted correctly. Turns out I DO have reactivation of EBV as well as VZV. She says they are the reasons for my LC symptoms and we are trialing several meds (antivirals and chromolyn sodium) to see if they help.
LC is being found to reactivate normally dormant viral or bacterial infections (think childhood illnesses like chickenpox, mono, flea bites, tick bites, etc.). Research is not showing whole viral particles of COVID in the body for LC sufferers but they ARE finding reactivation of normally dormant illnesses. It’s these infections they think are causing LC.
In my case I have two main viruses reactivated - chickenpox and mono. I’m starting with Valacyclovir small doses and titrating up to the therapeutic treatment dose of 3g/day. I’m also trying chromolyn sodium to assist with my allergic reactions and inflammation. It’s been suspected that I have mast cell activation as I have severe allergic reactions to things. But I’m thinking that my body is over reacting because it’s working so hard at clearing 2 infections!
I’m hopeful that antivirals and possibly other antimicrobials will work! 🙏🏻
I’m wondering if anyone else has been tested for underlying infections such as these and what treatments have worked?
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It has taken me two years to finally get some specific testing. Like you, I waited months, even with referral, to get into a clinic with LC treatments.
Finally getting the specific testing you reference. For me, my inflammation markers are high, and a test that checks for blood clotting shows I’m a little high. My tests don’t look terrible so I’m hoping treatment will get me feeling better.
It’s such a long road to find people who might be able to help!!
Good luck to you.
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1 ReactionHi Dloos,
Thank you for your well wishes 🥰
I hope treatments work for you too!
Just curious, did any underlying viral infections (EBV, VZV, CMV) or bacterial infections like Lyme’s show up on your tests? Have those been tested?
Yes, I did have those tests. I was positive for EB and Mast Cell. Lyme etc negative. After vitamin supplement infusion therapy, blood tests showed my body seems to have gotten EB and Mast under control.
Latest test shows my inflammation has improved, but still too high, and the blood clotting markers still a bit too high.
I have other sensory issues too, but I feel we are making some progress.
It’s a long road.
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1 ReactionWhat did your vitamin supplement and infusion therapy consist of?
I too have EBV VZV and mast cell issues. Going on 4+ years now…
I’m super interested to know what supplements and therapy lowered your EBV and mast cells?
I’ve been reading research on herbal antivirals such as quercitin derived from licorice and resveratrol for EBV.
I’m on Valacyclovir day 2 so no difference yet.
Can you please provide the name of the LC Clinic where this doctor works? If not publicly, could you please message me with the info? Thanks!
I was recently on paxlovid for getting COVID (the third time) and felt better than I have in years. It lasted about 10 days. That was a clue there could be a viral component. My primary care doc thinks that the five days of paxlovid was like taking a partial course for strep--didn't clear whatever virus it was acting on enough, so it just came back.
After the paxlovid experience I insisted on getting tested for EBV, CMV, HH6 and parvovirus. My EBV IGM was positive. In my deep dive since then I've discovered that doctors have different thresholds for what constitutes positive. I am seeing a specialist next week who thinks I have all four of these viruses reactivated based on my EBV IGM and high IGGs for the others. Like you said, misinterpretation of test results is a huge problem with EBV in particular.
I was only able to access a brief dose of famvir. Started Truvada but it made me hella sick. Check out the Drosu study about EBV that shows tenofovir drugs (e.g. Truvada) are way more effective than valtrex, famvir, etc.
I'm also doing high dose vitamin C IVs. See "Effect of high dose vitamin C on Epstein-Barr viral infection." (sorry, this site won't let me add links.)
You also might want to check out William Pridgen's studies on valtrex/famvir + celebrex. He's been doing trials for 10 years and has a patent. His theory is that reactivated herpesviruses (e.g. EBV and VZV) cause a host of issues such as long covid, IBS, alzheimer's. You can find more info on the Virios website (his company). Also, end of last year he did a pilot adding 15 days Paxlovid to the valtrex+celebrex combo with amazingly positive results.
What's the name of your doc?
I think paxlovid holds a lot of promise. How were you able to get it?
My infusions were high dose vitamin C with other additives. I’m sorry but I no longer have the sheet with the info on the exact infusion. I think similar to Myers Cocktail. Then I had a “neuro” infusion that was mostly B vitamins. I also had Ozone infusions. As with everything related to LC, I can’t say what may be the reason my numbers look a little better. I’m not on infusions now, because I really didn’t FEEL any better.
When I see my doctor again we will discuss the new lab findings. He may want me to resume some of my treatments.
Someone asked who the doctor is.
I go to an Integrative Medical Group in Temecula California and I’ve seen a few doctors in the group. It’s a long wait to get an appointment, and I cannot yet say what my outcome will be. I will say that they are all caring, and respectful. I’m hopeful that I may get better. (Some days). Lol
I’m also interested in longer term Paxlovid. It has never been suggested for me. I saw that some people got help from Acyclovir, which I had, so I took that for a few weeks without doctor supervision. It made no difference for me.
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2 ReactionsThank you for this info 👍
Just curious, did they test homocysteine prior to infusions?
Weird that acyclovir didn’t do anything with EBV reactivation but there are other antivirals she mentioned that could also be used for it.
Have you tried a trio Pax for 5 days to see if works at all? I know for me I noticed a difference in 2-3 days.
How are you titering up on the Valcyclovir, to get to your 3g/day? And how do you distrubute the dosing throughout the day? Is this based on your doctor's recommendation, or are you following a LC protocol of sorts? I'm ready to try this - possibly with Celebrex.
I meant trial not “trio”